It is no secret that autistic police brutality is a real problem. From beatings & violent, wrongful arrests to deadly shootings; the aggressive force police use against us, autistics, is our unfortunate reality. In fact, I DON'T FEEL LIKE POLICE OFFICERS PROTECT ME at all, but to be quite honest, it is the exact opposite— I FEEL LIKE I HAVE TO PROTECT MYSELF FROM POLICE OFFICERS. When I look at police officers, I see the grownup versions of my high school bullies. I knew for a fact that the majority of the guys who bullied me in school, the guys who made my high school, my middle school experiences a living hell were going onto college to study criminal justice to become police officers. It does make sense. The tough guys in school. The guys who bullied the quiet, meek girls like myself. They have the exact right type of personalities, the desire & the thrill deep inside of them to want to catch the bad guys. Of course they want to become cops! I have been absolutely petrified, absolutely terrified of police officers my entire life & that is the main reason why. In my mind, POLICE OFFICERS ARE BULLIES, people who misunderstand me, people who mistreat me, people who don't treat me like a human being. And no one, no situation has ever proven me wrong. Interacting with police officers causes me so much stress that my autistic traits become much more exasperated, much more visible than they are typically. But, even with how exaggerated my autistic traits become, I still don't "look autistic" in a stereotypical sense. I spent the majority of my life not knowing I was autistic, but despite that, I still knew that my interactions with police officers were dangerous. While I never act in ways that are considered "typical," that is exaggerated exponentially when I'm faced with high-stress situations, like when I'm in the presence of law enforcement personnel. And when police officers see someone not acting "typical," they often assume the worst & react in ways that put the life & the well-being of an autistic person, such as myself, at risk. I now know that the kind of stress police officers trigger inside of me causes autistic shutdowns. Before I knew I was autistic, I knew that I shut down when in the presence of police officers, but I had no explanation as to why that was. During an autistic shutdown, I more often than not become nonverbal, meaning, even if I wanted to talk, it would be impossible for me to make the words come out. And if I am able to talk during an autistic shutdown, I don't have control over what I am saying, my words often not making any sense. Acting in this way when conversing with police officers is extremely problematic because a person who acts like this is typically on drugs. I'm not on drugs; I never have been & I never will be. It's being autistic that makes me act this way. On top of that, it takes an extremely long time for me to process information & it takes exponentially longer when I'm highly-stressed. So, when spoken to by a police officer, I am often non-responsive. Not because I don't want to respond, but because I physically can't. I simply haven't had enough time to process whatever was just said to me OR that I was spoken to at all. Having an extremely long processing time is very common with autistics, but again, it is also very common with drug users. During the few interactions with police officers I've had in my lifetime, I have been told every time that there was something off about me, that they thought I was on drugs when they first interacted with me. It would have been SO helpful to know that I was autistic at the time I had those interactions rather than for those police officers to automatically assume that I was on drugs. The fact that it is automatically assumed that I am on drugs when I'm not is awfully troubling. This is why soon after I received my autism diagnosis, I designed myself an autism wallet card. This card explains that I am autistic, what autism spectrum disorder is, as well as certain behaviors that I may exhibit that others will likely perceive as unusual, but they are actually very typical behaviors of an autistic woman. I also wear a medical alert bracelet that contains my name, my diagnoses, & an emergency contact number. Plus, it states that I have a wallet card. I did this because I know that it isn't safe to reach for something without asking the police officer for permission first. But, since I often have trouble communicating verbally with police officers, I needed something that would allow me to safely communicate that I'm autistic & I have a wallet card without needing to speak. The reason why I have an autism wallet card & wear a medical alert bracelet is to protect myself from police officers, something that shouldn't be my job or my responsibility to do. Not only is a police officer's job to protect us, but I shouldn't have to disclose my disability in order to be treated with respect or to keep myself safe. My autism wallet card is pictured below (click on it to view it larger). Now, police officers aren't purposely harming autistic people. They simply aren't educated about how to recognize autism & the different behaviors autistic people exhibit. For example, when police officers see a person:
Autism Training & Education:
Police officers across the country & around the world are just not being properly educated or trained on how to treat & interact with autistic individuals. In fact, the type of & the amount of autism training that police officers receive is variable in different police departments in cities across the country. Plus, it's usually voluntary, not mandatory. Another problem is that the education police officers receive on autism tends to be tacked onto the end of the training on another topic. When this happens & only a short discussion is had about autism, how are police officers supposed to get the training, we, autistic people so desperately need them to have? On another note, it's hard to even pinpoint what constitutes as effective training. There is very limited research on how well various kinds of training programs work & ineffective training does more harm than good. There is also some research that suggests that while proper autism training makes police officers understand autism, it still doesn't make them any less likely to use force on autistic people. There really needs to be police training on autism that is standardized across all departments nationwide. However, some experts & advocates say that the best way to decrease violence is to minimize interactions between police & autistic people altogether. That just doesn't seem like a viable solution to me though, especially for autistic people like me, who drive. The Blue Envelope Program: The Blue Envelope Initiative represents a collaborative effort aimed at fostering a safer & a more understanding environment for autistic drivers during motor vehicle operator interactions & traffic stops. This program was just introduced in Massachusetts, the state in which I reside, earlier this month. It involves a Blue Envelope, which is intended to hold a driver's essential documents— a license, the car's registration, & a contact card. However, the significance of this envelope isn't that it is just a storage solution. This envelope features critical communication guidelines on its exterior, specifically tailored to assist law enforcement officers in recognizing & adapting their approach when interacting with a autistic drivers. While the thought behind this program is great & it shows that Massachusetts is trying, as an autistic driver, I don't love everything about the Blue Envelope Program. This is why I have a problem with the Blue Envelope Program:
Also, ever since the Massachusetts Police Department announced the introduction of the Blue Envelope Program, I have been reading numerous comments online from allistic people about how people who require a Blue Envelope in order to have simple conversations with police officers shouldn't be allowed to get behind the wheel. These comments are extremely hurtful & extraordinarily ableist. The people who made these types of comments clearly don’t understand autism or how it impacts people. I probably will get a Blue Envelope to keep in my car only because Massachusetts police officers recognize its purpose. But, it will either remain empty or I will put a few of my autism wallet cards inside of it. I don’t love the idea of keeping my driver's license anywhere other than my wallet. When Interacting With Police Officers, Autistic People May:
Key Facts About Autism, Disabilities, & Police Officers:
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Temple Grandin, that is. When many autistic people disclose that they are autistic, a common question they receive is, "Have you heard of Temple Grandin?" If you don't know who Temple Grandin is, she is an American animal science professor, public speaker, & author who is widely thought of as the "face" of autism. So, when many people think of autism or autistic people, they think of her. This is why many autistic people are asked if they have heard of her when they first disclose that they are autistic. When I was asked this question, I had not heard of her, probably because this was towards the beginning of my autistic journey of self-discovery. All of the literature I was choosing to read were written by women in their thirties & forties. Women who were much closer in age to me & therefore, their life experiences were very relatable to mine. Temple is in her seventies, so I know her life experiences are drastically different from mine growing up. However, as time went on, I have learned more & more about her & now I can tell you that there is so much about her that just doesn't sit right with me. Many other autistic people look up to her & call her a "hero" or an "inspiration," & this may surprise you, but Temple Grandin most certainly isn't a hero of mine. Before I tell you why that is, I would like to tell you about the positive things Temple Grandin has done for the autistic community.
Why Temple Grandin Isn't My Hero:
While, yes, Temple Grandin, one of the first openly autistic people, has done many great things for the autistic community, she will most certainly NOT be my hero until she changes her ableist views about autistic people. What Is Autistic Masking, Anyway? Autistic masking, otherwise known as camouflaging, is sometimes used by autistic people to disguise or minimize specific autistic traits or behaviors in social situations. Why Do Some Autistic People Mask? Some reasons autistic people might mask include, but are not limited to:
Who Masks? While any autistic person may mask, it is more likely for autistic people to mask if they:
What Are Some Examples Of Masking?
What Are The Consequences Of Masking?
Masking & Me:
Ways I Masked Growing Up:
Ways I Mask As An Adult:
One of the last things I learned about when I became aware that I am, in fact, autistic, are the problems autistic people have with self-care. Now, I can tell you that in some ways, being as germaphobic as I am is a real blessing because that is why many of these self-care tasks actually get completed. If I wasn't so finicky about cleanliness, being a hygienic person would be much more of a problem for me. All my adult life, I have had to complete self-care tasks in a certain way in order for them to get done at all, or in order for them to get done in a timely manner, depending on what the task is. I know that if you are an allistic, or a non-autistic person, you are probably wondering what exactly makes self-care so difficult. This is why.
Let's take a moment now to talk about various self-care tasks.
Showering 🚿 Steps Involved:
That is over SIXTY steps (because some of these steps are actually two or three steps) that need to be completed in order to take a shower every night. Doing that EVERY single NIGHT is EXHAUSTING. I take a shower immediately after dinner every single night in order to ensure that my shower is completed in a timely fashion. If I didn't do that autistic inertia would get in my way. I don't use a hair dryer, so I like to shower several hours before going to bed. I don't use a hair dryer because:
The other night, my mom came knocking on the door after I had already taken my clothes off because she had taken her glasses off & couldn't remember where she put them. And she couldn't see to find them. She wanted ME to find them for her of course. I told her I couldn't because I had already taken my clothes off in preparation for my shower. Putting my clothes back on after I had taken them off just wasn't possible due to my executive functioning difficulties & autistic inertia. Asking a neurotypical person to do this might annoy her or him, but for an autistic person like myself, putting my clothes back on after I had taken them off would make it so my shower take many more hours to get completed. And following the routine of getting my shower done by a certain time is EXTREMELY important to me. If I wasn't so germaphobic, my shower might not get done at all with such an interruption, but I have certain rules that I follow. They are:
If my dad hadn't been home & able to find my mom's glasses for her, I know this would've turned into an ugly fight. The entire mindset of not being able to put clothes back on after taking them off is a foreign concept for neurotypical people & is one of the many things that make living in a neurotypical world so stressful & so frustrating. Especially when those people just tell me I'm strange & they don't take the time to understand the way I live or WHY I do the things I do. By the way, my mom's glasses ended up being in her bathrobe pocket, a location I would've NEVER looked in, even if I HAD tried to find them. Childhood Difficulties: Growing up, my dad continued to wash my hair in the kitchen sink until a very old age because I just couldn't tolerate doing it on my own. My mom told the neuropsychiatrist who evaluated me for autism that washing my hair when I was a child was incredibly difficult because I would scream if even one droplet of water made it into my eye. Eventually, my parents forced me to wash my own hair in the shower & that was so, so, SO HARD. And it caused so many fights & so many meltdowns. Putting my head under the shower water felt no different than as if someone was pouring rubbing alcohol over my head. And then it seeped under my eyelashes & into my eyes despite the fact my eyes were squeezed shut. No joke. As time went on, I came up with the coping mechanism of using a face cloth to shield my face from the water & that is something I still use to this day. This is why I decided to call my blog Splashed With Water. I talk more about it in my first blog post, if you would like to go back & read it. Rather than boring you, by giving you the step-by-step breakdown of the rest of the self-care tasks, I'll just talk briefly about the following: Dressing 👚 I have to get dressed the second I wake up because with autistic inertia, it will get to be two o'clock in the afternoon & I'll STILL be in my pajamas. Brushing Teeth 🪥 Until I was in middle school or high school, I used a children's strawberry-flavored toothpaste. My mom forced me to change to a normal "adult" toothpaste at some point around the teenage years. Because it's what normal people use. Until I got more used to it, the minty flavor made it feel like my mouth was literally on fire. 🔥 And I just had to live with it. When I was talking about this during my autism evaluation, my evaluating neuropsychiatrist asked me why I couldn't use a non-mint flavored toothpaste. My response? My mom told me I had to use mint because that's what EVERYONE uses, that's what "normal" people use. I always felt like I was abnormal & needed to force myself to be "normal" in order to be accepted. And my efforts didn't work because I STILL wasn't accepted. I still can't use mouthwash, even though my dentist recommends it because the mint is too strong & it burns my mouth. Mint is a flavor that autistic people tend to be way oversensitive to. Now it all makes sense to me, but my mom still makes fun of me because I adamantly dislike mint-flavored anything, including ice cream & chocolate. How could someone dislike certain flavors of ice cream & chocolate? 🤷🏻♀️ Using The Toilet 🚽 Due to autistic inertia & executive functioning difficulties, I have great difficulty getting up to use the toilet if I'm not already in the standing position, so if I happen to be in the standing position, I literally act like it's a bathroom emergency when it isn't because I know that if I didn't do that, I'm not going to use the bathroom until I take a shower that night, many hours later. I know how ridiculous that sounds, but it's absolutely true. When I was a child, I wouldn't flush the toilet after using it because I was completely terrified of the sound it made. I also wouldn't use the bathroom if my mom happened to be doing laundry at that time. The spontaneous & LOUD sound that the washer & dryer made would scare the living daylights out of me! WELCOME to the first Autism Acceptance Month blog post of 2024! Today, I wanted to take a few steps back & go over some autism terms & what they mean. I use many of these terms throughout my blog & I try to provide definitions as I write. It's always good to take the time to pause & review what some of these terms mean though. And there's no better time to do that than when we're kicking off Autism Acceptance Month! Important Autism Terms & Definitions:
Happy Halloween! Well, maybe it's a Happy Halloween to you, but it's not for me. I've never liked this haunting holiday. So, there. I've come out & said it. I don't like Halloween! Now, having said that, if you're a Halloween-loving person, that's no biggie. In fact, one of my closest friends has a Halloween birthday & I just love her excitement around this frightful day. But, for me, Halloween just isn't my day. And that's okay, too. This Is Why:
I don't dislike everything about Halloween, so this is what I do like about the holiday:
Halloween Challenges For Autistic People:
How You Can Help:
I had a very interesting conversation with my dad about why I've never been successful in the workplace that I'd like to tell you about. I had been sitting at the coffee table, filling out paperwork about my disabilities all afternoon & the last question stumped me: Use this space to write any additional information about why you cannot work. I had put SO much information on all of the other pages of that form explaining why I cannot work that I simply felt like I didn't have anything else to add unless I repeated myself. So, I asked my dad, "Why do you think I cannot work? I want to see if you have any other ideas that I haven't thought of already." My dad has a better understanding of me than most people do because we're so similar to each other. He took a moment to think & then said, "My impression of it is that it's because you can't handle criticism. And because of that, you work ineffectively, which then causes you to get fired." I had never thought of it that way before, but what my dad said was absolutely true. I can't handle criticism. Before we go any further though, I'd like to clarify something. It isn't that I CAN'T work because truthfully, depending on the specifics of the particular job, I CAN work. What I can't do is work for someone else, in the traditional sense. If it's a job where someone is supervising me, that's the problem. Interactions with supervisors are the biggest issue for me in the workplace. While I had never thought of it like how my dad summed it up before, supervisors criticize, whether they're doing it now or they're going to do it in the future. That's what makes me shutdown around them. Interacting with someone who is either actively criticizing me or will criticize me at some point in time causes my brain to completely shutdown. This makes it impossible for me to function, as terrible as that sounds. Total comfort & feeling like I'm not going to be criticized or judged is key in order for me to not shut down. Shutting down at work just doesn't work, supervisors don't know how to interact with me in a way that doesn't cause me to shutdown, & that's why I can't work. This blog post is about what you need to know before criticizing an autistic person, although chances are, if you're reading this, you have already done it at some point in your life. I'm gonna throw in some info about how it feels to be criticized as an autistic woman, too. Why We're So Sensitive To Criticism: Bad Experiences With Criticism: Bullying & being left out are forms of criticism. Every autistic person you talk to will have something to tell you about experiences with those two things. The teasing, the mocking, the name-calling, the fact that no one wanted to be our friend, & MORE. Both bullying & leaving us out does real harm that affects us, autistic adults, many years later. It still affects me today more than I would like to admit. The bullying I endured when I was seven all the way through my early twenties did real harm & it still haunts me to this day. As a fresh college graduate & as an adult, I was constantly criticized by my parents, as well as by other caring family members. I personally believe that Asian & Jewish families expect more from their children than all other ethnicities do. Think about the number of Asian & Jewish doctors & scientists that are out there! Because I have a Chinese mother & a Jewish father, my parents unknowingly set unrealistic expectations for me from a very young age. Once my college graduation was upon me, I quickly discovered that I couldn't live up to those expectations, but I didn't understand why. Being constantly asked if I was happy with my life (I wasn't & I'm still not) & if I worry about what will happen to me when my parents die (I did & I still do) hurt immensely. Not only that, I had no explanation & no understanding of why I couldn't get to the place I needed to be in order to meet their expectations. Living almost thirty-two years of my life feeling like I was a disappointment to my family was extraordinarily difficult. It was even more difficult that I wasn't only disappointing my family, but I was also disappointing myself because I had the same expectations of myself that my parents had of me. I certainly don't blame my parents for any of this because I know that if they had known that I was autistic all this time, those expectations wouldn't have been put on me like they were. However, feeling like I was always falling short & I was never good enough put such a damaging amount of pressure on me for so long that it still affects me to this day to the point where sometimes I forget that their expectations of me have changed since my autism diagnosis. The Criticism Is Constant: I remember being constantly criticized for my behavior ever since I was a young child. Many other autistics have had the same experiences as I have had with this. "Look at me while I'm talking!" "Why do you have that grimace on your face?" "Why are you smiling? That's not funny!" "You shouldn't have said that. You should've said this." "Your face looks funny. Are you okay?" All of the above things have been said to me numerous times throughout my life. Unfortunately, an autism diagnosis hasn't stopped these types of criticisms from happening. My behavior & every move I make have been criticized so much that I simply can't handle any more of it. We're Stressed:
Us autistic people live very high-stress lives. Things that seem so minuscule to you really stress us out. We're sensitive to a lot of things like light, noise, our physical environment, & emotions. For example, I remember a time where my mom insisted that I attend a neighborhood Christmas party. I really didn't want to go because I was expecting to watch Christmas movies in my pajamas that night & now I had to be dressed & socialize with other people. I wouldn't have had such a problem with this party if it wasn't for the fact that it came on suddenly & I had no time to mentally prepare for the fact that I had to attend this party that night. I was in college at the time, so I was definitely old enough to stay home. It just wasn't okay with my mom. The sudden change in plans caused me stress & displeasure & when I expressed that to my parents, I was criticized for how antisocial I was being. This resulted in a complete meltdown. I felt like no one cared about me that night because no one stopped to listen to my thoughts or feelings. When I eventually made it to the party, I ended up standing like a statue against a wall for the few hours we were there because the criticism I received just prior to arriving at the party made it so that I didn't have the emotional capacity to socialize with anyone. We Have Low Self-Esteem: Many autistic people, myself included, suffer from low self-esteem. This is often the result of external factors, like bullying & being left out when we were younger (discussed in more detail above↑). When we have low perceptions of ourselves, it makes us more sensitive to criticism. Low self-esteem also makes us unable to understand or interpret criticism. Even when criticism is communicated with the best of intentions, ALL criticism can make us extremely anxious, which has long-lasting effects on us, crushing our self-esteem even more. Every single time I'm criticized, I feel like I can't do anything right. In fact, I feel like that regardless of whether or not I'm criticized. I know that this is because of how much I have been criticized during the course of my life. Many other autistic people feel this way, too. Our Feelings Are Often Dismissed: I have gone through my entire life feeling like my feelings don't matter. I have always felt like when I speak up, my thoughts & feelings are brushed to the side. I've been talked over & ignored more times than I can count. This not only makes us extra sensitive to criticism, but it makes us think we're being criticized when we're not being criticized at all. What Is Rejection Sensitive Dysphoria?: Although not a clinical diagnosis, rejection sensitive dysphoria, or RSD, is when perceived rejection or failure causes so much intense emotional pain that it becomes very difficult for a person to cope with his or her feelings. Autism & RSD: Many autistic people struggle with RSD & I certainly believe I am one of them. However, this isn't an issue for every autistic person. Increased rejection & punishment for not meeting neurotypical standards puts autistic people at higher risk for experiencing RSD. Also, since autistic people often have different sensory & perceptual experiences than allistic, or non-autistic people, they often experience more intense emotions. Autistic people with strong emotional sensitivity tend to experience social & interpersonal rejection stronger than allistic people, which can increase rejection sensitivity. Complications Of RSD For Autistic People: While most people do not enjoy being rejected or criticized (I mean, who would?), RSD goes beyond simply disliking rejection. RSD is so intensely emotional & can even be physically painful. The desire to avoid this unbearable pain & discomfort often leads to increased masking behaviors, which puts the autistic person at higher risk for burnout. Additionally, RSD can trigger mental health issues in autistic people including anxiety, depression, & eating disorders. So, before you criticize an autistic person, remember that while no one likes to be criticized, criticism is often much, MUCH harder for us to take than it is for the allistic population to take. And if your criticism causes us to shut down or to act unconventionally, please treat us with love, care, & understanding. It's what we need most of all. 💙 As my eighth grade school year neared its end, there was so much excitement & chatter among my classmates about high school. High school. Now those were two words I never wanted to hear. If you had asked me about anything having to do with high school that year, one of two things would have happened:
Throughout my life, each transition that I've experienced was harder than the one before. Now, I know why. Autism. We're known for having a tough time with change. Middle school wasn't a time that I would ever want to relive (I mean, who would?), but high school? Now that was terrifying. Eighth grade was the first time I ever had a male main subject teacher. My science & homeroom teacher, Gil, really took a liking to me. He gave me special treatment & gave me privileges that no one else in the class was allowed to have. He even intervened in situations where I didn't think it was necessary. He simply wanted to be there to take care of me. Being someone who didn't (& still doesn't) trust men, I considered myself pretty lucky to have had Gil be my first experience with a male teacher. He's retired now, but I've been able to reach out to him a few times since my college graduation to thank him for being so good to me. Anyway, Gil knew that I was nervous about going to high school, so he met my parents, my grandparents, & me one day over spring break to give us a personal tour. He used to work at the high school, so he knew it pretty well. My town was growing so fast, that the eighth grade needed to be moved to the high school for several years because there was no longer room for it in the middle school. By the time I entered eighth grade though, the grade had moved back to where it was supposed to be. I'm not sure how much that tour helped my transition to high school because just the idea of going to high school was SO upsetting. I knew I had no other choice because staying in eighth grade forever & skipping high school weren't viable options either. Having that love, care, & extra time from a teacher who could've been spending his spring break doing so many other things meant so much to my family & me. My First Day Of High School: Now, this is something I hate to admit, but on the first day of high school, as I was walking to the bus stop, there were big, ugly, fat tears that wouldn't stop forming. Like many parents, ever since I started school, my mom has always taken a picture of me on the first day. I couldn't pull myself together enough to take a picture that morning, so my mom took a picture of me after school instead. To this day, when I look at that picture, all I see is a sad, scared girl hidden behind the smile on her face. See below↓. On that particular morning, my next-door neighbor was looking out her front door at me walking to the bus stop, full of excitement for me. My neighbor was someone I have been very close to ever since I was a toddler, but I couldn't manage to turn to look at her for even a brief second because my face was so streaked with tears. Luckily, my mom could be my voice that morning, providing an explanation for my strange behavior which was completely embarrassing. What Exactly Was SO Terrifying?: There were three main things that were upsetting about going to high school.
I know that this is a very vulnerable & heartbreaking post, especially for those who know me personally. Please know that everything written in this post was written with my heart & soul & is absolutely true. School is very, very difficult for us autistics & my experiences are illustrations of why this may be. You may have heard of it, or maybe you haven't, but let's talk about what Spoon Theory is & how it applies to autistics. If you've ever heard someone exclaim, "I'm out of spoons!"; you might've been super confused. And no, (s)he didn't run out of silverware. It was Spoon Theory that (s)he was referring to. Spoonies, as we call ourselves, are people living with chronic illnesses, autism, mental health issues, terminal illnesses, disabilities, & more who use this theory to give their healthy family & friends a glimpse of what it's like to be in our shoes. What Exactly Is Spoon Theory?: Now, it's important to remember that I did not create Spoon Theory & I'm no Spoon Theory expert. I'm simply an autistic woman living with persistent, lifelong mental health issues who has benefited greatly from having a simple & concise way to explain my energy & ability levels on any given day. The Origin Of Spoon Theory: First, I highly encourage you to read the entire origin story of Spoon Theory, but here is Spoon Theory in a nutshell: Spoon Theory was originally created by Christine Miserandino, a woman with lupus. She & her best friend were at a diner late one night when her friend asked her what it was like to live with lupus. And that's when Spoon Theory was born. Christine handed her friend a collection of spoons as a concrete way to illustrate what it was like to live a day with lupus. "I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted." Every chronically ill, autistic, mentally ill, terminally ill, & disabled person begins each day with a limited number of spoons. The number of spoons most spoonies begin the day with is twelve because that's how many spoons Christine handed her friend that night. And every task that you do throughout the day takes up one or more of your spoons. How many spoons each task takes up depends on how difficult the task is for you to do. Depending on the person & his or her illness or disability, certain activities may allow spoons to be replenished. I'll talk more about that later on in this blog post. Remember that an activity such as getting ready for work has to be broken down into smaller steps. Getting ready for & getting to work usually contain all or most of the following steps for most people:
Once a spoonie runs out of spoons, (s)he has no energy left for the rest of the day, so we have to make choices about how we're going to use our precious spoons. For example, are you going to shower or eat breakfast today? If you go to the grocery store after work today, will you have enough spoons left to cook? Healthy people have the luxury of not needing to make these choices because they wake up each day with an infinite number of spoons. While the Spoon Theory was originated by a woman with lupus, it applies to so many other illnesses & disabilities out there as well. How Does Spoon Theory Apply To Autistics?: Autistic people wake up each day with a limited number of spoons. Let's continue to use the number twelve. Sometimes the number of spoons we wake up with can be lower than what is typical. For example, if we had a meltdown yesterday or if we didn't sleep well, we might hypothetically start the day with eight spoons, no spoons, or a negative number of spoons rather than the typical twelve. We have to plan our days very carefully in order to conserve our spoons. We face unique struggles because we live in a world that wasn't built for us. Navigating a neurotypical world uses up our spoons at an astronomical rate. The tasks that I find to take up the most amount of spoons tend to involve interaction with people. Also, because of my vestibular sensitivities, I live my life in fear of germs & illness, so tasks that involve cleaning or being in close contact with people I don't know also take up a lot of spoons. The below image outlines how many spoons I use up for many of the typical tasks in my daily life (although some tasks are hypothetical). As you can see from the below image, many of us, myself included, consistently run on a spoon deficit. It would be impossible for me to only use twelve spoons in a day. I try to conserve my spoons as much as I can, but so many daily tasks take up such a significant number of spoons that spoon conservation is impossible. This is why autistic burnout & meltdowns are so common in the autism community. We are quite simply out of spoons. Most days, I wake up feeling like I am out of spoons before I'm even out of bed because the limited number of spoons I am given each day just isn't enough. When you've run out of spoons every single day of your life, it really takes a toll on you. Because I am consistently spoon-deficient, I try to avoid the majority of tasks that take up five & six spoons. The only task in this group of tasks that I passionately love doing is taking care of my grandfather. Autistic people do not handle stress well & because caregiving is very stressful, it takes up a lot of spoons. However, it also can be very rewarding & it gives me precious time with my grandfather, which I love. Spoon Replenishment: While I am consistently running on a spoon deficit, I feel lucky that sometimes, my spoons can be replenished. This isn't the case with all spoonies. The below image outlines how I personally experience spoon replenishment. Certain activities are much more effective at accomplishing this than other activities. Sleep is something that helps replenish spoons for many spoonies, but that isn't something that helps me. I have many other things that replenish my spoons though, which I am grateful for. Because my spoons are used up much more quickly than they are replenished, this only helps my spoon deficit ever so slightly. Why Does Spoon Theory Help?: I love Spoon Theory because it gives our community a common language that explains our daily energy levels in a simple way. It also helps our healthy & neurotypical family & friends understand what their ill or disabled family & friends are facing in a concrete way. Sometimes, it may look to others that we are lazy when that isn't the case at all. We are simply out of spoons. Without this language & understanding, many of us would be using more of our precious energy than we had left explaining to our family & friends that we are all out of energy. (How ironic is that?!) If you’re new to Spoon Theory, I hope that this explanation helps you to see the struggles that us spoonies face on a daily basis in a new way. And if you know me on a personal level, I hope this helps you understand me better, too. 💙 I got my hair cut this morning. While I just LOVE the end result of a haircut, I don't like the process of having it done. This Is Why:
Why Many Autistic Individuals HATE Having Their Hair Cut:
The past week has been incredibly stressful for me. A little over a week ago, one of my dogs woke up from his night sleep covered in his own urine. This is the first time he has ever done that in his lifetime. He's never even done that when he was a tiny puppy, prior to being fully potty-trained. He's always warm (dogs' body temperatures are warmer than humans' body temperatures), but this particular morning, he felt warmer than warm. I put him in the bath tub while I called his vet & figured out what to do with him. Unfortunately, his vet wasn't able to get us in until 7:20 that evening. I wiped him down, but didn't give him a full bath because he hadn't quite had his flea & tick topical on for long enough before being able to be bathed. Plus, with him needing to go to the vet that evening & me being the germaphobe that I am, I wanted to bathe him after he came home from the vet rather than beforehand. I have to tell you, that day was the longest day ever. My little guy; who will be turning ten in a week; is typically such a lively, happy, energetic little man; but the life was completely sucked out of him. I had never seen him this lethargic & sickly before & that was quite scary & stressful. He didn’t pick up his head if someone walked in or if his name was called. But, it was even more alarming that he didn’t want belly rubs. That boy is the king of belly rubs. Even with the number of dogs I've cared for, I've never met a dog who loves belly rubs more than my sweet Teddy. When it was finally time for Teddy’s vet appointment, my mom & I both took him in. Based on his appearance as well as my observations that I shared with the vet, she thought that due to the area we live in, he probably had a tick-borne illness. He was brought back for a urine test & couple of blood tests (one of which was to check for tick-borne illnesses). Teddy tested positive for two out of the three tick-borne illnesses that he was tested for. Specifically, ehrlichiosis & anaplasmosis. I am super religious about combing my boys & checking them for ticks every single night. Plus, them being all white helps tremendously with being able to easily spot something like a tick on them. Not only that; I apply a flea, tick, & mosquito killer & repellent topical on them twice a month during the warmer months of the year; & I don’t allow them to romp around in tall grass, in wooded areas, & in all other places where ticks are likely to be. I did everything right & I never saw any ticks on him. The first day that I really thought he was almost all better was yesterday (exactly one week since symptoms started), but until I saw major improvements, I was stressed to the max. That would stress anyone out, autistic or not. With that in mind, let’s take a moment to talk about stress, how neurotypical people deal with it, how autistic people deal with it, & how I deal with it. What Is Stress?:
As explained by the World Health Organization: Stress can be defined as a state of worry or mental tension caused by a difficult situation. Stress is a natural human response that prompts us to address challenges and threats in our lives. Not everything that we experience that causes stress is negative. Here are some examples of negative & positive stressors. Negative Stressors:
Positive Stressors:
The Impacts Of Different Intensities Of Stress: Mild Stress: This type of stress typically motivates the individual to work as hard as (s)he can to achieve some type of end goal. Severe Stress: This type of stress is typically debilitating for both the individual & his or her performance. How Stress Affects Autistic People: Because autism tends to reduce the resources a person has to cope with challenges brought on by stress, an autistic person's experience with & their ability to handle various stressors will likely be much different than it would be for an allistic, or a non-autistic person. Autistic Comorbidities: In my blog post about why most autistics don't want a cure for autism, I mentioned the fact that there are a lot of comorbid disorders that tend to accompany autism. Some disorders that autistic people are at higher risk for are mood disorders. In fact, it is estimated that 10 to 50% of autistic people develop depression in their lifetimes & about 5% of autistic people develop bipolar disorder in their lifetimes. In the general population, prevalence rates for depression & bipolar disorder are much lower & are estimated to be up to 7% & less than 1%, respectively. Other mood disorders that autistic people are at a higher risk of developing include, but are not limited to anxiety disorders, post-traumatic stress disorder (PTSD), & obsessive compulsive disorder (OCD). Autistic people who are verbal & who do not have intellectual impairments are at a much higher risk of developing mood disorders than those who are non-verbal &/or are intellectually impaired. Due to the high prevalence of mood disorders in autistic individuals, stress could be highly problematic to cognitive, physiological, & behavioral functioning in the autistic population. Common Stressors For Autistic People:
Common Ways Autistic People React To Stress:
Studies Indicate That Autistic People Have Heightened Responses To Stress:
How Stress Affects Me: I have never been able to handle stress well. Stress tends to cause me to get flustered & prevents me from being able to think clearly or rationally. Depending on the intensity of the stress I am experiencing, it may cause shutdowns, which prevent me from being able to communicate verbally or non-verbally with others. Meltdowns are an extremely rare occurrence with me, but stress has caused meltdowns to happen in the past. My Most Common Stressors:
While some of the above stressors also may stress out allistic people, it is important to remember that I experience stress on a whole different level than what is considered normal. For example, there have been times in the past where I was trying to have conversations with my supervisors, but was unable to form simple coherent sentences due to the panic that resulted from my supervisor simply being in the same room as me. Another good illustration of how stress affects me is I have been told from multiple police officers that they thought I was on drugs during their initial interactions with me. I have never been on drugs in my life, but clearly, police officers stress me out so much that interacting with them causes me to act like I'm under the influence even though I am far from it. There will be a future blog post written about issues surrounding police officers & autism where issues like this will be discussed further. I know this is a topic most people are tired of hearing about, of talking about, but let's talk about COVID! This is a topic that I've been really looking forward to writing about, well... because I know my experience throughout the coronavirus pandemic isn't like other people's, so I wanted to share my experiences. We made it to what the entire country is calling the end of the coronavirus pandemic, but I just can't see it that way. I can't picture myself EVER seeing it that way, as sad as that is for me to admit. Yes, I still [mostly] wear a mask when I'm indoors, unless I'm eating or drinking. Yes, my immune system is perfectly functional. No, I don't have an autoimmune disorder & I don't take any immune-suppressant drugs. So, why do I wear a mask then? Well... I have a very severe case of germaphobia. I was in the bank this morning, taking care of some business with my parents & of course, I was the only one in the bank wearing a mask. It would've been physically impossible for me to work with any individual person for more than a couple of minutes if I wasn't wearing a mask. Why? Anxiety, of course! After being in her office for several minutes, the woman who we were working with asked me if I would feel more comfortable if she wore one also. Of course, I told her, "No, it's fine for you not to wear one." Even though I completely understood where she was coming from, being asked that question made me super uncomfortable. I hate that the world went back to pre-COVID times, where wearing a mask is something you just don't do. I felt like I was being looked at like I had three heads, being the only one in the bank who was wearing a mask. But, that's what I needed to do in order to access the services my parents & I needed. If I had a sprained ankle, so I hobbled in on crutches or wore a boot, people wouldn't wonder why a person like myself would need to utilize equipment like that. Because that's a physical injury that people can see, they don't wonder what's wrong with you. For me, wearing a mask makes my invisible disability visible. I look young & healthy, so I know people wonder why there's a mask on my face. However, let me also mention that many autistic people cannot tolerate wearing a mask due to sensory sensitivities. Masks can cause some autistic people to not be able to function, to have meltdowns, to have shutdowns, or all of the above. On the other hand, many autistic people are germaphobic, just like I am. COVID-19 has completely exasperated my lifelong fears of germs & illness. Living in a world with the existence of COVID is my literal nightmare. When I've told doctors, autism resource people, & anyone else I've spoken to that I'm very germaphobic, so I've really been struggling living through this time, a common response that I get is, "Yeah, I used to be too, but then I got COVID & it wasn't so bad, so I'm no longer that worried about it." Those people don't get it because COVID has absolutely nothing to do with me being a germaphobe, it only exasperated my fears. Sadly, I do not remember a time in my life where germaphobia wasn't a problem, as I've experienced an extremely intense fear of germs & illness thirty years prior to COVID-19 even being part of our vocabulary. A Germ-Obsessed Child: There was never a time in my life where I didn't have an obsession with germs. In fact, my parents will tell you that ever since I was old enough to speak, whenever they had the news on & the news-anchors were talking about an illness, whether it was about the flu season, a measles outbreak, etc., I would repeat over & over again, "What sick? What sick? What sick?...". They say that a child's personality traits really start to show when they're around two years old. I am proof in the truth behind this statement. My parents didn't know what they were in for because their little germ-obsessed toddler never lost her germaphobia as she grew up. In fact, my germaphobic tendencies sadly only intensified with age. Illness-Related Trauma: When I was six years old, I got super sick with the flu & as a result, I developed a really high fever. Not a go to the hospital high fever, but a high fever. I believe that the fever I got from the flu is what caused these extremely debilitating dizzy spells that I luckily outgrew when I was seventeen. These dizzy spells were absolutely traumatizing & they usually caused me to become extremely nauseous & vomit, as well. The only thing that ever got them to subside was sleep, but ever since I got past the napping age, I have never been good at sleeping unless it was actually bedtime. Even going to sleep at bedtime wasn't always easy. I have been to countless doctors & had countless tests done, including an abnormal EEG, in order to figure out the cause of these spells. Unfortunately, it remained a mystery to doctors. The closest we came to figuring this out was that it was probably either a migraine or a seizure variant, or both. Migraines & seizures are comorbidities that autistic people often struggle with, but I didn't know I was autistic during this time. Fear Of Dizziness Because of my history with dizziness, I have fears of all things that cause dizziness or cause issues with vestibular processing. Here are some of them:
How The Coronavirus Pandemic Turned Me Into A "Normal" Person:
When the pandemic first began in the spring of 2020, my parents joked with me & told me that now, I'm finally a "normal" person. What they meant by this was that everything the doctors were recommending we do to stay safe & healthy were habits that I've had ever since I was a young child. I didn't wear a mask or stay six feet away from people until doctors recommended we do that, but literally everything else that they recommended was already a habit, & it had been practically my entire life. My brother even jokingly told me that I should sell my hand sanitizer on eBay because it was sold out everywhere & I had a mountain of it at home. Here are some (but not all) of the things I was doing &/or feeling long BEFORE COVID-19 was a part of our vocabulary:
Things NOT To Say To Me: "COVID Isn't That Bad. It's Just Like The Flu!" The last time I came down with the flu, I was six years old & it was the time I described above. COVID being compared to the flu will only make me freak out. I get the flu vaccine every year & I've gotten every COVID vaccine I'm eligible for. People are experiencing vaccine fatigue, but I can tell you that I'm not. I wish I could get a COVID booster every four months because once it's been more than four months since my last vaccine, I no longer feel safe being around people. "You Just Have To Accept That We're All Eventually Gonna Get COVID." While I know this is true deep down, it's not something I'm able to accept. I have never had COVID at this point & I intend to keep it that way for as long as I can. When the time comes that I do eventually test positive for COVID, it's gonna cause panic. I just know it. "You Don't Have To Wear A Mask In Here. I'm Vaccinated." If I felt like I didn't need to wear a mask, I wouldn't. I don't like wearing a mask, I just don't feel safe without one. If vaccines protected us from illness for an extended amount of time, I would consider not wearing a mask. Since that's not the case, that statement only causes discomfort because it makes me feel like I'm making the wrong choice by wearing a mask. "Are You Really Gonna Wear A Mask Forever?" Asking this question really doesn't make any sense because truthfully, I probably am, unless COVID & all illnesses become nonexistent, which isn't going to happen, at least not in my lifetime. I often blame the fact that I'm wearing a mask on my grandpa because he is ninety years old & is in the high-risk group. However, that isn't the truth & I just use that as an excuse to make myself look better to people who I'd rather not share this quirk with. In closing, please remember that you'll never know for sure what someone else is dealing with, unless they come right out & tell you. If you see a seemingly healthy, young person wearing a mask, don't tell them it's okay to remove it or look at them & wonder what's wrong with them. Wearing a mask is just as okay as not wearing one. It is our personal choice & our comfort level. If I felt like it was possible for me to walk into a store without a mask covering my face, believe me, I would. I don't enjoy wearing a mask, I just have no other choice. For me, I have two choices: to wear a mask or to hibernate for the rest of my life. Multiple times throughout this blog, I have referenced the three levels of autism, but what exactly do the levels of autism mean? And what's the difference between them? Let's get into that right now. Each person who received an autism diagnosis after May 2013 (when the DSM-5 was published) was diagnosed with level 1, level 2, or level 3 autism. The difference between the levels is simply the level of support that a person needs in his or her daily life, with level 1 autistics needing the least amount of support & the level 3 autistics needing the most amount of support. I am a level 2 autistic, so that means that I fall right in the middle. Level 1 Autism Spectrum Disorder:
Level 1 autism was formerly known as Asperger’s syndrome, high-functioning autism, or the mildest form of autism. It is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Although there isn’t just one set of characteristics that level 1 autistic children AND adults have (remember autism is a spectrum with a very wide array of characteristics), there are some traits & experiences that level 1 autistics tend to have in common:
Level 1 autistic people might also experience depression or anxiety that is the direct result of social difficulties. They also tend to get bullied or left out of social situations, which can lead to mental health issues & difficulties later in life. I personally experienced very severe bullying from early childhood all the way through college, with the worst of it being in my mid-teens & beyond. I will get more into this in a future blog post. Level 2 Autism Spectrum Disorder: Level 2 autism is where I fall on the autism spectrum. This level is in the middle of the spectrum & usually requires substantial support for independent & successful daily living. Level 2 autistics tend to experience all of the level 1 characteristics, but to a greater degree. They also might have more noticeable stimming behaviors (sometimes called restricted or repetitive behaviors). Stimming isn't something to get rid of unless it causes harm to the autistic person or to the people around them. Hair pulling, biting, slapping, & banging the head against something are all examples of harmful or dangerous stims that should be gotten rid of or exchanged for another stim that isn't harmful or dangerous. Level 3 Autism Spectrum Disorder: Level 3 autism was formerly known as low-functioning autism or severe autism. However, it is very important to remember that these terms are no longer used & using these terms are actually harmful to the autistic community. You can read more about that in my prior blog post about the harm of autism function labels. Level 3 autistics require very substantial support for daily living. This means that they would benefit from more assistance & more accommodations at home, at school, at work, in the community, in relationships, etc. in order to live as independently & as successfully as possible. Level 3 autistic people may also need a lot more supervision, even in adolescence & adulthood than level 1 & level 2 autistic people do. Level 3 autistic children AND adults tend to experience all of the level 1 & level 2 characteristics, but to a much greater degree. Some other common characteristics of level 3 autistics are:
Final Thoughts: The levels of autism are the medical community's way to help clarify the needs & abilities of autistic individuals. It is also important to remember that individuals across all areas of the autism spectrum have amazingly unique strengths & abilities that neurotypicals often do not have. We need to remember to recognize & support these strengths & abilities as well. Regardless if someone is a level 1, a level 2, or a level 3 autistic person, all autistic people experience this world very differently from each other. We all may struggle with daily living, but in very different ways. |
AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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